Notes from 10/8/2020 meeting
Welcome new members and visitors
Gratitude for our Doctors at the MD Center at AMCH and our PD community
Next meetings will be:
Last year 10 people from the Albany area PD community travelled to Tokyo to attend the 5th WPC. We bonded, learned and saw the sights.
Save the date
Will you join us at the 6th World Parkinson Congress to be held in Barcelona, Spain from June 7– 10, 2022. More than 3,000 people from 60+ countries are expected to attend the WPC 2022. Delegates will be those who are dedicated to understanding, researching, treating, and curing Parkinson’s disease (PD), including those who are living with it.
Nancy Eson: We would like to gage interest in a care partner support group. If you are interested in knowing more, joining or leading this type of group, contact us through the website https://www.cdparkinsons.org/
Dr. Molho will take questions through chat. You will be muted to avoid distractions.
Dr. Molho has graciously agreed to be speaker at our October meeting for at least the last five years (I don’t have records before that) and has been an excellent source of PD education for us.
Dr. Molho is the director of the Parkinson's Disease and Movement Disorders Center and currently serves as a professor of neurology and the Riley Family Chair in Parkinson’s Disease.
Dr. Molho (thank you William for the fantastic notes)
William’s notes on the Capital District Parkinson’s Disease Support Group meeting, Thursday, October 9, 2020:
Turnout: At one point we were at 45 Zoom screens, representing 60-70 people. I don’t know where we’d put everyone in a face-to-face meeting ;-)
WPC 2022: Dr. Molho promoted the next World Parkinson’s Congress, to be held in Barcelona June 7-10, 2022.
COVID-19 and PD: Dr. Molho’s office gets updates 2X a week on NYS and local Coronavirus and Covid-19 numbers. The state continues to report low rates of infection and hospital admissions, but Eric reminded people to stay vigilant and not get lax on prevention and protection measures. Some parts of the state are reporting new spikes and clusters. People with PD are reported to be at higher risk, but that is likely more due to age and other risk factors than due to PD by itself. People must assess their own level of comfort with risk, and use common sense when determining how physically intimate to get with grandchildren and other loved ones.
COVID-19 and ongoing PD treatment at Albany Medical Center: Ninety percent of consultations are currently in-person at the Mov’t Disorders Center. Of course, that number could change if the pandemic environment changes in the Fall and Winter. All safety and prevention protocols are being strictly observed. Nursing homes and hospitals have normalized their visiting policies, a loosening from the lockdown of the early months of the pandemic starting in March 2020.
Effects of pandemic on ongoing PD research & clinical trials at AMC: The initial lockdown bogged down such projects, as suddenly extra precautions and risk reduction had to be rushed into place for everyone. Things have started up again, however. For comprehensive list of clinical trials, see website https://clinicaltrials.gov/ referenced in the Chat below. Here is a summary of Dr. Molho’s discussion of the major studies going on at Albany Med:
— The KARMET Study (aka the "Poop Study") on constipation and PD, being conducted with the firm Enterin Inc., looking at early involvement of the enteric nervous system in PD. This is a novel therapy, involving a compound that interacts with alpha synuclein protein. For more information or if interested in participating, contact Dr. Molho’s office.
— Motor Fluctuations Study, looking at “On/Off” states and working on treatment to level out the fluctuations. Could involve a combination of long-acting Levodopa and short-acting Levodopa. This would be an improvement on the currently-prescribed drug Rytary. The monitoring of symptoms by participants in this study is demanding, Dr. Molho said.
— Trial of a completely new drug, Cerevel, specific to the D-1 receptors. This study is just getting off the ground
— Federally-funded study to develop automated way of looking at brain MRIs to try to more accurately distinguish PD from other neurodegenerative disorders like PSP and MSA.
— A Study to Evaluate the Efficacy of Prasinezumab (RO7046015/PRX002) in Participants With Early Parkinson's Disease (PASADENA)
**N.B.: You can get a sheet from the AMC Movement Disorders Center listing and describing all the clinical trials Albany Med is involved in for PD and other neurological disorders.**
Q&A with Dr. Molho: Exercise, exercise, exercise. “There is no proven way to slow the progression of PD other than exercise.” A mixture of aerobic and resistance training. Stationary bikes, yoga etc. etc. Importance of finding an exercise activity you enjoy — otherwise you won’t do it.
Stem cell treatments: Some exciting prospects but even more unknowns and unintended outcomes
Probiotics and probiotics for constipation: Can work for some people but not for others.
— 30 —
Annotated chat below:
18:56:55 From Carissa O'Rourke : I am doing LSVT but will be going out on maternity leave next week. There is a physical therapist at Albany memorial doing it. her name is Janet and we’ve been working together
19:10:49 From Manuel Cruz and Suzanne Roberson : Can Dr. Molho speak to the benefits of exercise?
19:11:12 From Thomas Estep to Nancy and Jud(Privately) : My name is Thomas Estep, I am a representative with Amneal Pharmaceuticals in Albany. I can have speakers present at other meetings. My email is Thomas.firstname.lastname@example.org. 518-506-8930.
19:30:06 From Kristi LaMonica : Are new clinical trials listed on the AMC movement disorders webpage?
19:34:46 From Nancy and Jud : https://clinicaltrials.gov/
19:40:23 From Nancy and Jud : https://www.nourianz.com/ ?
19:49:22 From Steve & Tracy : what is the value of the https://www.apdaparkinson.org/article/what-is-a-datscan-and-should-i-get-one/
19:49:49 From Steve & Tracy : what is the unified Parkinson rating scale? https://en.wikipedia.org/wiki/Unified_Parkinson%27s_disease_rating_scale
19:51:26 From Kristi LaMonica : will AMC be part of the monoclonal studies? Also for the D1 drug, a patient can’t be on meds at all?
19:51:27 From Steve & Tracy : what in the digestive tract causes the growth of alpha-sinucleans?
19:57:39 From Bruce Plotsky : What are your thoughts on 'young plasma'? https://parkinsonsnewstoday.com/2020/07/22/young-plasma-infusions-safe-potentially-helpful-parkinsons-patients-phase-1-trial/
20:01:08 From Steve & Tracy : if someone exercised 30 min/day before being diagnosed, should they increase the intensity and/or daily duration after diagnosis?
20:03:33 From JoAnne Stanoski : could you, please discuss stem cell, laser treatment & the use of oxygen ( hyperbaric ) treatment for park. thanks
20:07:16 From JoAnne Stanoski : as an FYI for everyone, I did a probiotic regime a while ago & now have no problem/issues w/constipation.
20:09:21 From Manuel Cruz and Suzanne Roberson : Any promise from fecal transplants?
20:13:14 From JoAnne Stanoski : are there any new things (treatments) going on in Europe that we don’t have here?
20:22:46 From Victoria Plotsky : Thanks Dr Molho!! : )
20:23:02 From Carissa O'Rourke : thank you! great information
20:23:40 From Kristi LaMonica : Thank you!